Mum has just been discharged from a Memory Centre. Is this usual?

[Lynn21]

I was quite distressed this week when I attended my Mum's care home on Monday to meet up with a 'new to us' person
Have been used to 6mthly visits from a different representative & she has been really good.
It has been useful for me to know Mum's cluster scores.

What really concerns me she has handed it over to an extremely busy care home which has 58 rooms (majority requiring nursing or palliative care) so concernedMum's Dementia will not be monitored as well.
Where Mum is it used to be more 'residential' downstairs. At the moment there is only 2/3 who will engage into a conversation.

Also the last report in May this year stated that the GP was not accepting Share Care Agreement, so the Memory Clinic is supplying Donepezil.

Does this happen in different areas around the Country - or is a regional 'money saving' venture?

 

[PJ]

Hi @Lynn21 sorry to hear of your concerns I’m afraid I’m not much help with your questions but hopefully someone else will be along soon to support you. Take care

 

[Lynmax]

Once my mother had been given a formal diagnosis by a consultant ( following some scans and tests) we were referred to a memory nurse who came to the house to help prescribe some medication, slowly increasing the disagreed and monitoring any side effects. When mum was on the highest dose, the nurse discharged her back to her gp for repeat prescriptions but said we could phone the clinic any time in the future. We also had a visit from someone who told us about various charities and activities mum could get involved with - all of which were refused!

Since then, zilch, no further input, visits, nothing! Mum has stopped taking the donezepil as she does not agree with taking pills so the repeat prescriptions appear to have stopped.

I guess we will make contact in the future as the illness progresses.

This was in Manchester and seems to be common practice here. We were happy with the process of getting a diagnosis though, speedy and efficient but somewhat lacking in follow up support.

 

[AliceA]

After initial diagnosis 3 years plus ago my husband was signed off to GP care. A new GP asked for a new assessment this year. This was refused as being unnecessary as the condition was just proceeding.
This is about vascular not alzheimers.
Many countries have stopped prescribing drugs because they now say that research says the results are no better that a placebo. The UK is different as once a drug is licensed it stays licensed. Other countries reconsider and follow new research.

I am uncertain why it is helpful to know at what 'stage' people are. People can vary from day to day, hour to hour. It depends on so much. Every one is different. All drugs affect different people in different ways.
The is no cure at the moment. Lifestyle is the factor in many cases. A warm kind atmosphere is reassuring.
Loving visits are remembered if not the actual person who visited.
Teepa Snow has good videos on YouTube.

 

[canary]

My mum with Alzheimers was diagnosed at the memory clinic, then after a couple of visits to monitor her heart rate prescribed donepezil and then discharged back to GP for the GP tp prescribe the donepezil. Once she was in a care home the CH GP took over the prescription of her donepezil. There was no support or advice or anything from the memory clinic after diagnosis - just a few leaflets, one of which was the Alzheimers Soc, so I found this place and more help and advice than I have found anywhere else.

 

[Philbo]

After the initial diagnosis (FTD) following MRI and SPECT scans, my wife had 6-monthly appointments at the memory clinic. After 2 years, she was discharged back to her GP and I naively though that they would be in touch to agree some sort of care plan.

In the meantime, I got on with finding out myself, about any sources of help/support and the only help we've ever got has been from seeking it out ourselves. We did get a call from the GP after about a year inviting us in for a mental health review, though this turned out to be nothing more than a tick-box exercise, blood pressure check etc.

I did bump into someone from the memory clinic at a dementia coffee morning run by our local AgeUK, who had various support organisations attending. The told the lady about the lack of support on being discharged and she said that we could self-refer back to the memory clinic at any time, if there was any dramatic changes in my wife's condition - something I had not been advised about initially.

 

[AD123]

My MIL was initially diagnosed at the memory clinic and prescribed donepezil. She continued to be seen every six months. At that time doctors were unable to prescribe donepezil so she had to remain under the memory clinic. A few years later things changed and her doctor could prescribe it. We were also informed that as we could now self refer it would easy to see them again if there was a problem. On that note we were discharged. Never seen them again since.

 

[jugglingmum]

Initially my mum had 6 monthly memory clinic visits, but then the policy changed and she was discharged back to the GP.

I was told they don't think there is any benefit in continuing with memory tests as it requires (for a person that is mobile) a trip to the clinic, which is disruptive, and then the tests can cause distress, if they are on donezipil the heart rate monitoring that is needed can easily by done by a GP.

Whilst it is interesting to know the score, once the diagnosis is made, the score is not going to change treatment, and other issues with behaviour are the things that need treatment, so from a clinical point of view I actually can't see the point in 6 monthly reviews measuring a decline.

 

[marionq]

John was diagnosed six years ago and we had a consultant and a CPN who were both excellent in giving advice and getting things done when needed. They can push social services and the GP if they are so
Inclined. I asked not to be discharged when they offered to do so. This week however I have put in writing that I won’t bring him back to the clinic as he has reached the stage of rebelling against too much coming and going and waiting around. His consultant’s secretary phoned and asked if I would like the doctor to call at the house. I was amazed and impressed but said no because her time is valuable and I think John wouldn’t benefit. I am the one who likes to talk to her. I put in an email all the points I would have made if I had an appointment with her.

Our experience has been good but I guess it varies according to area and the personnel involved.

 

[Sirena]

My mother had three appointments at the memory clinic over about two years, at the final one the consultant said she said her dementia had moved from moderate to severe, and after that there were no more appointments at the clinic. However the CPN visited her at home every 6 months, and the consultant said I could ring her any time (I never did). There was talk of prescribing memantine, but after about 9 months of tests on her heart (I don't know who thought it was a clever idea to ask her to wear an ambulatory heart monitor but I could have told them she'd remove it) they decided there would be little benefit. So she is not on any medication. She's now in a care home so any monitoring is arranged by the staff. In one way it's interesting to know what the scores are or what stage your PWD is, but in another it doesn't really matter.

 

[BlueFox]

I was quite distressed this week when I attended my Mum's care home on Monday to meet up with a 'new to us' person
Have been used to 6mthly visits from a different representative & she has been really good.
It has been useful for me to know Mum's cluster scores.

What really concerns me she has handed it over to an extremely busy care home which has 58 rooms (majority requiring nursing or palliative care) so concernedMum's Dementia will not be monitored as well.
Where Mum is it used to be more 'residential' downstairs. At the moment there is only 2/3 who will engage into a conversation.

Also the last report in May this year stated that the GP was not accepting Share Care Agreement, so the Memory Clinic is supplying Donepezil.

Does this happen in different areas around the Country - or is a regional 'money saving' venture?

 

[BlueFox]

Hi
This happened to my Mom too. It seems to vary depending on the local structure. I think there is just very limited specialist help available.